Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)
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Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"

I have mentioned before that I never get thirsty. This is a hard concept for people to understand because it is completely natural and innate for them to get thirsty. For me a sense of thirst is as foreign as a sense of sight is to an individual with blindness. I have figures out what it might be like from reading and from wanting more of a beverage that tastes good but other than that I have no idea. We have tried every low tech problem solving idea known to man and I must confess I have left a Hansel and Gretel trail of forgotten water bottles I was supposed to carry with me and drink from. We tried scheduled drinking every 3 hours, but I would be in the middle of something when the alarm went off and then never remember to drink. So finally after years we are doing a brain MRI focused on my hypothalamus to see if we can determine a cause for this lack of thirst. The dehydration is causing problems with my already damaged bladder and my already ill functioning blood pressure so we need a plan here, an oasis in the desert. Although an oasis in a dessert sounds pretty good too!

Last weekend I decided that since it was summer it was time to paint my toe nails. This is like a circus side show act and I could easily charge admission for a crowd. I do it myself only because I can not trust anyone else not to bump my toe joints, which is a pain unlike anything other. It is like playing Twister with nailpolish and contorted feet. So I begin by propping myself on the floor with the necessary supplies. I also take extra muscle relaxing meds and pain meds. Then the contortion begins. It is like trying to paint the toe nails of a cat. My muscles do not cooperate, I end up with nailpolish in places I definitely was not aiming for, and my toes rest against each other in a very unhelpful manner. Finally about two hours later and half a bottle of nailpolish remover I am satisfactorily done and exhausted. I won't paint them again for a few months hopefully.

Next week I have an appointment with the PA at the GI office. I had requested to see the other doctor in the practice for follow up because I just could not communicate with the doctor I have been seeing - he even admitted more than once that he was not paying attention to me. The secretary - AKA gatekeeper- decided it would be too long to wait to see the other doctor so she settled on having me see the PA. I don't mind, I have seen the PA before and she actually listens to me and understands what I am saying. My problem is not swallowing right now, the problem is that my diet is limited to basic carbs otherwise I suffer severe stomach pain and nausea. Living off of breakfast cereal, tortilla bread, toast, melon, crackers, milk and occasionally cheese can't be providing me with all of the vitamins and stuff that I need. Its the unintentional vegetarian diet.

Due to the fact that the Dysautonomia has taken a hammer to my internal thermostat, I have to be very careful with temperature regulation. In the winter I can not maintain my own body temperature and rely on heat, clothing, blankets, and hot drinks to keep warm. Winter is easier because I can always bundle up more. In summer I can only get so naked before breaking local laws. I have great trouble keeping hydrated, although I do supplement with popsicles. And I become a heat hermit. Any day that the temperature or heat index spikes around r over 90 I can not leave the house because I can not cool myself down enough and I become at risk not just of an autonomic crisis but also of heat stroke. This summer is off to a hot start and I have already been quarantined due to heat more than a few days. And right now we only have one air conditioner for the entire apartment, positoned in the living room. I can get another one added due to medical need but it is too late this year as it would not be added until September or October at this point. Next year I am starting the process in March. So we have an elaborate series of box fans conducting the cool air to the small bedroom turned computer room/tv room where on hot nights I sleep on the couch. When it is not roasting I cool my bedroom off by opening the sliding glass door until just before I go to bed. I close it, and the curtain, because the sun has an annoying habit of shining early in the morning, which wakes me and anyone who knows me knows that waking me that early in the morning is a dangerous thing to do.

Even your 'no news' is worth reading, to me. Yes, much of it I already know, but good to remember your lack of thirst issue. Do you know what a 'camel back' is? It's a backpack-style fluid container with a long flexible straw to reach your mouth. If you put really cold water in it - perhaps that would help prevent problems with the heat?

I've been taking these vitamins: http://www.liquidb12.com/

I like them.

No way I would take that much effort to paint my toenails but - you go Girl!

Wild Olive

BlogHer

Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back